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Personal stories

Robert and the Idiopathic pulmonary fibrosis cough

Robert, 70 from Lincolnshire, was diagnosed with IPF in 2020, he speaks about the impact of the persistent pulmonary fibrosis cough and ways of managing it.

In the beginning it was just like a typical winter cough but it just wouldn’t go away.  In fact it got worse. Eventually, I began suffering bouts of coughing that would lead to retching and choking to the extent I was desperately fighting to catch a breath.  

These bouts of coughing would be triggered randomly by things like eating, playing with the dog, over exerting myself, and even laughing and joking would start me off.

But after time I learned to manage my activities to reduce the risks of triggering a coughing fit.

When suffering one of these serious coughing fits, I became very distressed.  I pride myself in being a strong character but on more than one occasion I would be on the verge of tears as a result.  These coughing fits would leave me physically drained, almost to the point of exhaustion and it would take me quite a long time to recover.

On a number of occasions I’ve felt judged for having a cough.  

Even though you explain to people what your medical situation is, the accusative looks are enough to make you feel guilty to the extent you can think some pretty nasty thoughts about the person(s) looking at you.

‍What helps your cough? 

I now understand my limitations and avoid the known triggers. There is medication out there that can help and along with self learning/help i.e. understanding your limitations and avoiding the triggers helps manage things to almost normal.  

I find that pre-empting any unpleasantries by explaining to people about your cough, before you start coughing, helps with their understanding – enormously!

> Information on managing a pulmonary fibrosis cough

> Pulmonary fibrosis cough research

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